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Consultation or tokenism

Beverley Beech highlights the difficulties in making information work for women

During the summer of 2016 AIMS was approached by the staff at Frimley Park Hospital for comments on their poster ‘Feeling Your Baby
Move’. Here is a copy of that poster.

This was AIMS response:
We welcome the opportunity to comment on the Frimley Foundation Trust’s proposals for reduced fetal movement advice. The following are the comments and views of the AIMS Committee members:

The Poster

We feel that the whole tone of the poster is scary and we are concerned that this will alarm and stress women rather than helping them to relate positively to their baby and know when something is not right. What we feel would be more effective is something that focuses on helping women to feel their baby’s movements and learn what is normal for their baby. This is beneficial to all women, not just those whose babies happen to have a problem later on.

This could then be accompanied by a clear message about how a small number of babies may have problems, but the majority are fine, along with how many babies with problems change their behaviour or move less, and that the research has shown that when women’s instincts about their baby’s movement are listened to, and action taken, this may reduce the number of babies who die in the last weeks of pregnancy. This then needs to be followed by clear assurance that the midwife will listen and take concerns ver y seriously; and go on to provide women with details of their options for accessing support.

It would be helpful to say that this advice is given as a precautionary measure and that most babies will nevertheless be fine. The comment that ‘Around half of women who had a stillbir th noticed that their baby’s movements had slowed down or stopped’ needs to be set in context of the much larger number of women who will experience a temporary reduction in their baby’s movements when the baby is not at risk. We would suggest the poster should indicate that the advice applies to those who are later in pregnancy, and re-wording the warning, for example, ‘tell us about this straight away’.

The latest Cochrane advice does not find repor ting of reduced movements of proven benefit – www.cochrane.org/CD00914/PREG_management-ofreported-decreased-fetal-movements-during-pregnancy. But, we are aware that times have changed since then – largely because women who had repor ted reduced movements and had a stillbirth have complained about how their concerns were ignored. bmcpregnancychildbir th.biomedcentral.com/ar ticles/10.11 86/1471-2393-12-S1-A10 RCOG current guidelines – www.rcog.org.uk/globalassets/documents/guidelines/gtg_57.pdf

Note: This guideline states: ‘the UK identified that an inappropriate response by clinicians to maternal perception of RFM [reduced fetal movements] was a common contributory factor in stillbirth’. The issue is about women being listened to and taken seriously if they think something might be wrong rather than raising fear.

Women need reassurance that they will be listened to (and that has to be the reality which it often isn’t in themaccounts we receive) not to be frightened by arbitrar y measures of something that is not really measurable.

Therefore we suggest that the poster needs to say,If you are concerned about your baby’s welfare – talk to us – we are listening, we will take you seriously.

We also suggest the following changes to the poster:

Suggest removing the statement ‘It is not true that babies move less towards the end of pregnancy.’ There are women
whose perfectly healthy babies do move less towards the end of pregnancy. The statement ‘Get to know your baby’s normal pattern
of movements’ is a more helpful statement.

Delete ‘You must NOT WAIT until the next day to seek advice if you are worried about your baby's movements.’

Replace with: ‘If you are worried about your baby’s movements then do contact your midwife and discuss your concerns.’

‘Do not use any hand held monitors, Dopplers or phone apps to check your baby's heartbeat.’ Add: ‘Doppler monitors expose the baby to higher levels of ultrasound and the long-term effects of this are still unknown. Just as importantly, false reassurance can be gained by a mother picking up her own heartbeat instead of her baby’s.’

The Care Bundle

The outcome measures for reduced fetal movements are based on the percentage of women reporting RFM who have received the leaflet and ‘understood the message’ – but if women have not received the leaflet, or not understood it, they may be less likely to report RFM than those that did and skew the results?

If the measures are to be of any use they need to check that ALL women have had and understood the information, not just those that acted on it. In order to show that the inter vention has been effective, they would need to be looking for an increase in the proportion of
women who actually report RFM following the introduction of the leaflet, and how many of those women actually needed an intervention? We would like to see all hospitals collecting statistics around this inter vention, and would like to know whether you would be able to provide the following details before and after the poster goes into use.

The number of women who report RFM

The rates of inter vention and outcome in that group

The rates of stillbirth, induction, caesarean section and other outcomes which may be affected by reporting of RFM.

Carbon monoxide tests

We are aware that Trusts are under pressure to carry out CO testing of all pregnant women, but we are very concerned about this. It seems there are two real problems with this – one is about informed consent, and the other is about sur veillance taking priority over
support. Helping women to stop smoking can only happen by trusting and suppor ting those women, and we are finding more and more women who are concerned about the sur veillance aspect of antenatal care. This is leading women to conceal things rather than to turn to
midwives for support.

When such tests are offered, women need to know that they can decline or accept, and be assured that if they decline they will not be hassled to change their mind. They also need to know that if they accept, then they need to know in advance how they will be suppor ted after they receive the result of the test. They need this information in order to make an informed decision about whether or not to accept the test. Having identified smokers it appears that they are to be referred to the stop smoking ser vice or ‘other action’. Please could you clarify for us what other actions are included here? We wonder whether this might be a factor in referral to social ser vices, which many women are par ticularly anxious about, or is it to provide them with continuity of midwifer y carer which we note the care bundle does not mention?

Now that many women have stopped smoking we know that it is par ticularly the poor and stressed par t of the population who continue to smoke, the advice has conflated smokers and small babies without addressing the possibility that there may be other causes why a
woman is carrying a small baby. These actions risk spoiling the trust between midwife and mother and influence some women to avoid health professionals altogether.

We note that continuity of midwifery carer has reduced the numbers of women who smoke and suggest that this initiative would have a greater effect.

The response from Frimley Part Hospital said:‘I took your comments back to the working group today; they were very grateful that you took the time to review and feedback to us. Your comments are valued and it is clear that you have spent a lot of time considering the information but unfortunately we cannot make any major changes to the poster, as it is a national campaign. All we have done locally is format the poster from the national “Saving babies’ lives, a care bundle for reducing stillbirth” document so that the information can be displayed on one page.'

So, what is the point of seeking comment when there is no intention of acting upon it? AIMS has now written to NHS England to ask them to consider our comments.

Do check if this poster is being used in your area and send your comments to chair@aims.org.uk.Beverley Lawrence Beech